Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Friday, December 7, 2007

ER is coming to a dreadful and painful end. Last night another bad episode appeared and continued the steady assault on disability rights. It seems the writers have decided to kill every person that uses a ventilator to breathe. Age does not matter--a few episodes ago the writers killed a child and last night they killed an elderly woman. Both murdered characters were sentient and aware. The dialogue was particularly dreadful last night and I have no doubt any one who uses a ventilator must have been deeply offended. I sincerely hope that others who have some experience in this area--not with death but use of a ventilator--will comment on the latest episode of ER and heap scorn on the episode

Thursday, December 6, 2007

I read a very long article in the Sunday NYT Magazine section entitled "A Death in the Family". Much of what the author, Daniel Bergner, wrote about that touched upon disability I found offensive at multiple levels. The article in question is about Booth Gardner who was a two term governor of the state of Washington during the late 1980s and early 1990s. It has been 14 years since Gardner was in office and he now has Parkinson's disease. His "last campaign" is a single minded effort to get an expansive death with dignity bill passed Washington.

When I first read Bergner's article I was angry--how could the NYT publish such a well written piece of crap. I know, as do many others, that the NYT is more often than not antagonistic to disability rights but Bergner's article takes this to an entirely different level. I am not sure who I dislike more--the NYT, Bergner, or Gardner. I cannot dissect the NYT antagonism to disability rights but I can state with certainty that Bergner and Gardner have out of control and over sized egos.

I found Gardner a tragic figure but not for the reasons Bergner wrote about. Gardner seems to me to be an an ego maniac who is unable to live without a spotlight on himself. Bergner detail Gardner's disfunctional family life and his quest to pass a death with dignity law speaks volumes about the author and subject but little about the central issues involved in the right to die debate. Let me be explicit: Gardner's quest is not about control, "my life, my death, my control" as he puts it. If this was his aim there is nothing that can stop him except for himself. There is simply no basis in reality that assisted suicide is about self autonomy or control as Gardner puts it. If one is determined they can empower themselves and end their own life or seek out help--and if the person in question is terminally ill and makes a serious request I doubt many physicians would deny their request. Death with dignity laws are simply not needed and discriminatory--it is just to easy to target those society does not value foremost among them the elderly and disabled.

What Bergner's article does is cater to Gardner's quest for the spot light and reader's prurient interest in end of life decisions. But the sub-text, and it not very subtle at all, is an overwhelmingly negative view of aging and disability. Here is Bergner's description of Parkinson's: it "isn't terminal. The disease can leave the body trembling, contorted, rigid; it can rob the memory and muffle the voice; it can leave a person silent; but it doesn't offer an end to its torture". This passage and many others like it are gratuitous and not necessary. They are also damning and question why anyone would ever want to live with a disability. Is it not easier to just help the elderly, infirm, and disabled die?

After some reflection, I feel sorry for Gardner and Bergner. Gardner just cannot accept he will never be the center of attention again--that his time for the spotlight has come and gone. I also wonder to what extent he is being used by others to advance and expand the death with dignity laws. As for Bergner, I was stunned and saddened when he admitted that his father has Parkinson disease. I was stunned because there is one fine passage in the article. I was sad because his father's condition seems to prevent him from seeing his father as often as he might wish. It is as though he is afraid of his father with whom I suspect he once had a good relationship. Bergner writes that although he "lives close by, I visit him too briefly, too infrequently." He also struggled to tell his father about the article. It is in the same paragraph that I found one excellent passage: "I had been scared that the mere fact of the subject being broached between us would lower barriers--within him, within me; against suicide, against a quiet kind of patricide--barriers whose existence I didn't even want to think about, because to acknowledge them would be to confront the impulses they guard against". This leads me to wonder is Bergner afraid his father will ask him for help committing suicide or does he want to see his father to take his own life? I suspect Bergner does not want to see his father suffer and wants an easy way out--he does not want himself and other "sons and daughters like me" to "confront so much decrepitude and mortality, the realities that keep my visits too brief and too infrequent".

In conclusion, Bergner's article is self serving and sad. It has far more to do with his own cowardly behavior and refusal to accept his father's condition than it does death with dignity. It also reminded me why, in retrospect, I feel good about myself and the way I was able to be there for my own father after he had had a major stroke. Despite the fact seeing him and his impaired condition was profoundly depressing at times I was able to support him as much as possible and hope I made his last few months as meaningful as possible.